Changing the World One Day at A Time

Category: Congenital Heart Futures Act

I’d seen some good (and not-so-good) examples of how nonprofit groups had used Foursquare to raise money. But could Foursquare be used for awareness and advocacy?

I began thinking about this question on April 1 related to my work with Big Love Little Hearts, a nonprofit group that focuses on congenital heart defects. And I began framing that question around some basic statistics about these diseases.

One in 100 children are born with a heart defect. When was the 100th day of the year? It happened to be April 10. Could I come up with a campaign in nine days, launch it, and have it be successful?

I had no idea. But I’m not afraid of failure so I set out to create a Foursquare experiment.

We created a hashtag, #100X100, which stood for 1 in 100 on the 100th day of the year. I created a Web site to explain what it was and why it was important and to set the action steps we wanted supporters to take (spread awareness with the hashtag and call or write their representatives asking them to support the Congenital Heart Futures Act and Routine Pulse-Ox Screening). We also created a Facebook fan page and Twitter profile.

Then we recruited volunteers to commit to a guerilla, grass-roots effort to use Foursquare to spread our message.

On the evening of April 9, a few dozen Big Love Little Hearts volunteers added the following as a “tip” to 600 Foursquare locations: “1 in 100 children are born w/ a heart defect. Pulse-Ox screening saves lives – you can too! Check in with the hashtag #100X100”.

We also embedded a link in the tip to the One Hundred Squared site. We chose what we thought would be the most checked-in locations on a Saturday — airports, Starbucks and Target stores, gyms, etc. — in major cities around the U.S.

One of the benefits of using Foursquare as an origin point is that most people who use it sync their check-ins to Twitter and Facebook. This meant that one person checking with #100X100 had the possibility of being viewed across three platforms with three audiences. Talk about bang for your (time) buck!

Did it work? Better than I could have possibly imagined. My goal with this experiment was simply to see how social media worked for advocacy and awareness.

But something extraordinary happened.

I began Foursquaring/Tweeting/Facebooking about #100X100 at 12:01 a.m. on April 10. Big Love Little Hearts supporters followed.

By 7:30 a.m., an angel who was following one of our followers on Twitter (but not us) noticed our hashtag. It turned out that she is an adult with a congenital heart disease who was not diagnosed at birth and who is alive today because she received lifesaving surgery.

Her passion for our work led her to call me and commit to donating $1 for every time someone used the #100X100 hashtag until midnight on April 10.

How much did we raise? She gave me a cap of $25,000. I knew the moment she said it, that our group, which was not quite 10 months old, wouldn’t reach the cap.

But, much to my surprise, our supporters were so engaged that we made it almost halfway to that goal. By 11:45 p.m., the hashtag had been used 11,703 times across all three platforms. Our donor was so impressed that she donated the full $25,000.

That money was enough to pay for 12 surgeries for patients in developing countries. Twelve lives saved in 24 hours. Not bad for something we didn’t even plan for.

That’s great, but did it work for advocacy and awareness? A resounding yes!

What was the advocacy we wanted to accomplish? On April 22, about 100 people from various congenital heart-disease groups were set to meet in Washington for CHD Lobby Day.

We wanted to plant a seed for people who had used #100X100 on April 10 to call their Senator or member of Congress and let them know that they supported measures that would greatly improve the lives of the two million people in the U.S. with congenital heart diseases.

On April 22, we again used the hashtag via Twitter, Facebook, and Foursquare to remind our supporters of our goal. By noon, more people had visited our Web site than had come to the site during the entire day on April 10.

I had seven appointments with senators and members of Congress from Illinois that day. There wasn’t a single one I walked into in which an aide didn’t inform me that constituents had been calling about this all day. People from other states text-messaged or called me to relay similar messages.

More than 500 people let me know they had contacted their representative. Some 300 more contacted the Big Love office to do the same. I cried with pride the entire day.

What was the benefit of using Foursquare as our social-media springboard? The tips we left are still there and will stay there perpetually. For several locations, our tip is still the most recent and therefore what shows up when people check in.

One last nugget—all of this was free. We raised $25,000, saved 12 lives, and set the stage for millions of lives to be changed. If you work at a nonprofit group and don’t feel like you’re using Foursquare, Twitter, or Facebook to its potential, e-mail me: charityestrella@gmail.com.

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Not surprisingly, I am once again blogging mid-flight. Last week it was on the way to NTEN’s excellent Non-Profit Technology Conference, this week I’m headed to Washington D.C. to talk Development Mapping and take part in CHD (Congenital Heart Defect) Lobby Day. Although my participation in Lobby Day is on behalf of Little Leo Foundation, One In One Hundred and Big Love Little Hearts (three of my non-profits), I’d be going even if I was only representing Big Love Little Hearts. This piece is written to CHD groups that work in the developing world, but this applies no matter what your cause community is.

So, why would I invest time and money going to Washington to lobby for things that affect children in the U.S. when Big Love helps children in developing countries? Better yet, why is this a question I feel the need to pose or answer? Quite to my surprise, this is actually a question that both a donor and one of our Provider Partner Organizations asked me!

The answer is very simple: what happens in this country will inform what we’re doing in developing countries the next decade and the decade beyond that. What we’re able to do now is a result of research the NIH funded to create new surgical techniques and improve on old ones in decades past. Diagnostic techniques developed in the last dozen years make it possible to find children we never even knew needed our help before. Everything we do in the undeveloped world is because someone in the developed world fought hard to fund the invention and/or implementation of it.

Right now there are three reasons to be in Washington D.C. if you care about or work in the CHD community in the developing world. The first is the Congenital Heart Futures Act. The research this will fund and the registry it will create will allow us to do our jobs more efficiently and effectively for decades to come. This translates into more lives saved, period. Mortality rates for CHD have declined 30% in developed countries in the last two decades – how wonderful would it be to see those same rates in the developing world, where we’re still losing at least one third of children born with heart defects?

Pulse oximetry is the second reason and perhaps the most relevant to those of us working in the developing world. One percent of the world’s population is born with a heart defect – that’s roughly one million new cases of CHD every year. 90% of children born with CHD will be born in developing countries. Only a third of them will ever be diagnosed. Pulse oximetry is a simple, reliable and cost effective means for diagnosing critical congenital heart defects. Adding it to the National Newborn Screening Panel in the U.S. will pave the way for its use worldwide. Advances in mobile technology make it likely that in a very short time we can perform this test, log the results and send them to a doctor from a smartphone out in the field…from the places where children never get diagnosed because no one ever sees them.

The third reason to be in Washington D.C. right now is that the global CHD problem will never be solved by any one group. It won’t be solved by any one government. It won’t be solved by any one organization working in the U.S. and it won’t be solved by any one organization working in the developing world. It won’t be solved by any one doctor. It won’t be solved by any one University. There are 7 million children waiting to have their hearts repaired worldwide who can’t afford it. Even in the U.S. where qualified care is abundant, we are losing 10% of our CHD kids before they’re a year old. This doesn’t even take into account those who die while they are toddlers, children, teens, adults…this problem is gigantic and it’s going to take all of us working together to solve it. The opportunity to meet your fellow CHD crusaders and to form partnerships with them makes this not only the final, but also the most important reason to be at CHD Lobby Day.

If you’re a CHD group doing work in the developing world and aren’t planning to participate in Lobby Day, I urge you to change your mind. If you can’t make it in person please call your representative this week and/or email the national newborn screening panel. Be part of changing the lives of CHD kids who haven’t even been born yet. 10 years from now….20 years from now, you’ll be glad you did!